Health care reform

Get to Know Your Ex

The word “exchange” is a funny one. It’s Latin root “ex” means  “out of, away from” like “exodus” or “exorcism.” It also means “without, not including” like ex-dividends. Or “former” as in “ex-husband.”

In health insurance, it means “confusing, convoluted, complicated comparison.”

Of course, I am only half-kidding.

But all the more reason why parents of kids with hemophilia and patients 18 and older need to start reading about and preparing to engage in the coming state insurance exchanges. These are part of the Affordable Care Act, passed by Congress and being enacted in phases with most of the changes beginning in 2014. These include the exchanges, a virtual “marketplace” (basically a web site) where people can shop and compare to buy the healthcare insurance that best suits their needs and budget. Michelle calls them the “Travelocity” of health insurance. 

But with presidential elections looming, and some states suing the government to repeal the ACA, it’s still a Wild West health insurance show out there.

On Saturday, I attended a great presentation by Michelle Rice, director of public policy at NHF about state exchanges. NHF has been holding webinars to train the community’s top advocates. Michelle reported over 85 people attended the first webinar! 

Here are some snippets of what I learned Saturday from Michelle:

1. State exchanges will be like “one stop shopping”—a gateway to coverage for 30  million people who need insurance (and don’t forget the ACA will mandate most everyone have health insurance). 

2. The exchanges allow comparisons on four levels of benefits. They provide federal subsidies for premiums and out-of-pocket (OOP) costs for people below 400% poverty.

3. There’s funding for states to set up IT development, as the websites will need to be sophisticated to help the millions who will be tapping into them. 

4. There are minimum standards for all exchanges to allow easy comparison:

5. 4 coverage tiers based on patient OOP costs; 

6. Essential health benefits (being defined at the state level)

7. There will be “navigators” to help people use the exchange,  multiple ways to enroll in person, online, phone), and one simple application

8. In 2014 all high risk pools will go away and these people will end up on exchange.

 9.   2 states, Louisiana and Arkansas,  won’t operate their own

10. 15 states already established the exchange (which doesn’t mean they can actually do it!)

11. 3 plan to establish (California, Colorado, Maryland)

12. 19 states are studying options 

13. 12 states have taken no significant action

Things are moving quickly, and if you have a chronic disorder like hemophilia, you must have insurance.

Want to learn more? Go the NHF’s website and download slides from the last webinar. Get EXcited about learning more about insurance exchanges and EXcel! The more you learn, the better you will be able to handle the coming changes. 

Good Book I Just Read

Funny Blood: The remarkable
story of my daughter Ros
 by  Juliet Batten, 2011 

This is the very sweet and easy to read story of a young English woman who in 1974 adopts a beautiful baby girl, named Rosamund (“Ros”) who later is diagnosed with von Willebrand disease. The book, while no where near as in-depth and educational as Journey by the Massies, nonetheless paints a picture of the isolation in the 1970s and 80s of having a child with VWD, a disease not written about often or paid much attention to, given the medical demand that hemophilia/HIV provided. Juliet gives a heart-wrenching testimony of her daughter’s suffering and her stoic nature, as she braves so many hospital trips and procedures, and survives her first periods, which entail lengthy hospital stays. Both mother and daughter share strong character, uncomplaining nature and solution-seeking orientation. A wonderful mother and person, Juliet, and husband John, adopt Paul, a needy and active four-year-old, adding more stress and challenges into their lives, which they seem to overcome through the years with persistence and dedication.

The book is well written, interesting and inspirational. Ros succeeds beyond all odds and is now leading a successful life. My friend Richard Atwood, bleeding disorder book critic, writes, “The author did not expect to adopt a child with a major medical problem, but Juliet was capable and her Quaker beliefs provided a peaceful serenity. By necessity, Juliet learned about VWD, became a self-taught expert, and supported others; she also wrote articles for hemophilia and for adoption. Juliet, now retired, writes in her diary as Ros writes a blog; their inspiring story is insightful for living with a bleeding disorder.”

To this I would add that the book’s only flaws are the sometimes misinformation of the medical and scientific side of hemophilia, VWD, plasma and factor concentrates. For example, Juliet writes that 3% levels of factor VIII means severe hemophilia–not true. Also her descriptions of factor concentrates are a bit off-base. The book could have used more stringent medical editing. But if you look to the book for a heart-warming story of a remarkable mother and daughter, and to gain insight on what living with VWD is like in the 1970s and 80s, you will be very rewarded. I especially like how she gave such high marks and kudos to the Haemophilia Society and her HTCs. Juliet sounds like a classy lady! Three out of five stars.

Supreme Court Upholds ACA

It’s fair to say we’ve all been holding our breath to see what the Supreme Court would rule this past week on the Affordable Care Act, often referred to as “Obamacare.” The ruling will have a long-term effect on the bleeding disorder community. Indeed, I’ve been to Hawaii, North Carolina and Tennessee as part of our insurance symposia Pulse on the Road to ask families and patients to pay careful attention to their healthcare policies, and to what’s happening in Washington DC. Would lifetime caps be reinstalled? Would pre-existing conditions be allowed again? Our children with hemophilia would face terrible battles for healthcare access if these provisions were reinstalled.
But in a 5-4 vote, the US Supreme Court ruled to uphold most of the health care law. One central controversy was over mandatory insurance; many Americans saw this as unconstitutional and a threat to our freedom to choose our own protection and access to care. Chief Justice John Roberts gave an opinion, which upheld the constitutionality of the individual mandate because it is a tax. The Medicaid expansion has been limited.

We’re lucky to have such a vigilant community that jumped at the news and shared right away; our vigilance was earned the hard way, through massive loss of life. From the Hemophilia Federation of America:  “HFA is reviewing the ruling and will closely monitor its impact and are committed to ensuring adequate access to care for all people with bleeding disorders,” said Kimberly Haugstad, Executive Director of HFA. “We will continue our advocacy to protect beneficial provisions of the ACA, so that the overall health care system is improved.  We encourage everyone in the community to join us.”

ACA was made into law March 2010, in the hopes of reforming our convoluted and expensive healthcare system, to try to lower costs and to keep all Americans insured. About 45 million Americans (out of an estimated 300 million) do not have insurance. In fact one young man, age 27, called me two weeks ago with a severe bleed, telling me he didn’t have insurance! He wanted me to send factor that I normally give to patients in developing countries! His only resort would be to go to the ER, get factor, incur massive bills and pay the rest of his life, even just $10 a month, for this enormous cost, easily a $20-30,000 visit. The hospital would eventually write off his treatment as bad debt.

With mandatory insurance, this young man will be forced to find insurance, and his healthcare should be covered. There are so many provisions in the ACA that benefit patients with bleeding disorders, indeed anyone with chronic health disorders. But the stage is set for November: how will this ruling impact the presidential elections?

Maybe it will inspire more Americans to get out and vote. It’s only by persistent advocacy that we have even come this far. I don’t know what the future will bring, but I am breathing a little easier tonight knowing my son is covered for one more year, even while wondering what financial impact this will have on us all long term.

For more information, visit or call 1-800-230-9797.

Thanks to Tom Bennett, Executive Director, Hemophilia of North Carolina for sharing the HFA alert with us.

Aloha Pulse on the Road!

It’s appropriate to start off Pulse on the Road in 2012 near one of our nation’s most historical sites, Pearl Harbor, as the nation this past week holds historical debates on healthcare. But let’s not predict disaster!

Pulse on the Road welcomed 35 families of the newly founded Hawaiian Hemophilia Foundation, headed by Jennifer Chun, mother of five, including two sons with hemophilia. Jenn’s done a super job of bringing the community together to learn, support one another and network.

The day began with a presentation by Jennifer Dumont of Biogen Idec, sharing the different sciences behind long-acting factor and the various clinical studies by various companies. The race is on!

The Bayer Living With Hemophilia program was presented by Kim Shaeffer, nurse at University of Davis, California and covered all aspects of raising a child with hemophilia, including nutrition and dental care.

After lunch came Pulse on the Road, our three-hour insurance symposium. This POTR started with my historical look at healthcare in hemophilia, how the US healthcare system has treated us post HIV-era (good!) and how and why it has evolved to treat us as a generic chronic disorder–not good. Next, Michelle Rice, public policy director at NHF, shared ideas on how to compare and contrast healthcare plans with your insurer, using the NHF Insurance Toolkit. Last, Jim Romano of PSI concluded by reviewing what the Affordable Care Act is, and what Hawaii can expect from healthcare reform.

We had great audience interaction with a very informal format. In fact, so much of everything in Hawaii is informal and laid back–a really nice change of pace!

The weather was great and following yesterday’s program, Michelle and I today were able to see the number one attraction in Hawaii: Pearl Harbor. What an excellent and tastefully done museum, film and viewing of the Arizona. It was breathtaking and sobering. It makes you all at once feel proud to be an American, and we were respectfully silent, knowing that beneath our feet, submerged in the shallow waters lie the bodies of the sailors who perished so quickly that fateful day, December 7, 1941.

If you want to watch a great movie on Pearl Harbor, watch “Tora! Tora! Tora!”

And keep watching the news about the Supreme Court’s hearings on the Affordable Care Act; what is decided will affect us all for a long time to come.

(Thanks to Baxter for funding Pulse on the Road and to the Hawaiian Hemophilia Foundation for hosting it!)

Great Book I Just Read

Issac’s Storm by Erik Larson
Reading about the greatest natural disaster in the US seemed appropriate after seeing Pearl Harbor today. On September 8, 1900, the seaside city of Galveston, Texas was hit with the worst natural disaster that had yet ever hit the US, a colossal hurricane that muscled its way through the Caribbean Sea. Galveston was an up and coming town that wanted to rival New Orleans one day. Monitoring the weather was Issac Cline, a seasoned and educated veteran of the US weather service. But hubris also ruled; despite the many warnings in the sky and on the ground, most notably from the Cubans, the world’s weather experts whom the Americans dismissed as inferior, the storm rolled in with a devastation of Biblical proportions. This story, masterfully told, details the players, the average folks and families, and the hurricane itself in a suspenseful and heartbreaking tale. Over 6,000 men, women and children died that fateful day; Galveston never recovered, and when oil was discovered near Houston shortly afterward, Galveston became the playground of the Houston rich. Why this book has not made it to Hollywood is beyond me: it has everything needed for a blockbuster including Issac’s petty rivalry with his brother, also a weatherman, who rightly predicted the storm would be a killer. Four/five stars.

Is Tonight the Night for Health Care Reform?

This could be an historic night, and certainly a polarizing one across America. Why not just refer to the wonderful Friday Update email I get every Friday from Kisa Carter at HFA? On Friday she wrote:

“The House is expected to vote on an amended version of the Senate Bill on Sunday. If passed, the bill will enact the Senate version of the health care reform bill with the House bill changes. The President and Speaker of the House Nancy Pelosi have spent the week discussing the bill and seem confident that the bill will be brought to the House floor for a vote in the next 72 hours. A section by section analysis of the changes made in the reconciliation bill can be found at:”

CNN reports active debate happening even as I write: at 8:58 p.m. “Democratic Rep. Tim Bishop of New York said that “amidst angry and at times even hateful rhetoric, amidst the misinformation and scare tactics, there exists one simple truth, and that truth is that the current system is unsustainable.” And Republican Rep. Tom Price, a doctor from Georgia, said health care is a “moral endeavor and should be grounded in principle. This is a sad day, yes, because there are so many wonderful and positive and patient-centered solutions that could be enacted.” Earlier, in an impassioned speech, Rep. John Lewis, D-Georgia, urged his colleagues to pass the bill.

Tomorrow morning should have big news for us in the bleeding disorders community. One good news is that in the current bill the House voted to eliminate lifetime limits on all plans, effective six months after the bill passes, Kisa says. She adds, “Annual limits will be eliminated by 2014 and have restrictions on annual limits until then. This is great news for the bleeding disorders community. Below are a few links to the Congressional Budget office’s reports on the latest version of the House bill.”

This has been a gut-wrenching year for everyone, as the nation tries to enact health care reform but digs in its heels on different principles regarding how to do it. For us, even if the only thing that changed were that lifetime limits were eliminated, it would be a victory.

(Please sign up for Kisa’s Friday Update by visiting

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